Remembering Seth, raising awareness

Mickaylah Curtis, 3 years old, is having a hard time dealing with the loss of her big brother. Seth Dunford, shown cuddling with him in this cellphone photo. Dunford lost his battle with Batten's Disease on Jan. 19.(Photo: Jason J. Molyet/News Journal)Buy Photo

NEVADA – Three-year-old Mickaylah Curtis gave her older brother a kiss on his cheek, told him she loved him and that it was okay if he went now to be with God. Six-year-old Seth Dunford then took his last breath, his battle with Batten disease finally at an end.

Seth had been baptized at noon that day, Jan. 19, along side his little sister, who was the only one who could get a response from him during his last hours.

"We knew it was almost time and he was not responding at all to our voices or touches, but when Mickaylah talked to him, he grinned. He loved her so much," said Seth's grandmother, Crystal (Freeman) Alger.

At age 3, Seth was a normal, healthy boy. Then he quit breathing in the backseat of his mother's car while having a seizure, his first of many.

"I called 911 and the paramedics got him breathing again. He was taken to the hospital in Upper Sandusky because we had been on our way to my mom's house when it happened," said Seth's mom, Rebecca Castle.

At first, Seth was diagnosed with epilepsy, which is a common mistake with Batten disease. In a recent needs assessment completed by Batten Disease Support and Research Association, more than 30 different diagnoses were reported by families before the final Batten diagnostic determination. Autism, seizure disorder, epilepsy, PDD and others are common early diagnoses.

After months of testing, including genetic lab work, Seth was diagnosed with Batten disease, also known as Spielmeyer-Vogt-Sjögren-Batten disease, a rare, neurodegenerative disorder of the nervous system.

Each of Seth's parents had the gene that causes an enzyme to be missing on his 11th chromosome. There is no cure for the rare disease that first took away Seth's ability to walk, then his sight, speech and the ability to sit up on his own or eat without a feeding tube.

"I grieved when we got the diagnosis, with each milestone he lost and now I grieve because he's gone," Castle said.

Castle said because of the intense medical care required for her son, he lived with her mom, Alger, over the last two years.

"I can hardly bring myself to go in his bedroom. It's cold in there. The silence in my house since he has been gone is deafening," Alger said.

Along with Castle, Alger and fellow grandmother, Nancy Groves, did everything they could so Seth would be happy and comfortable.

"Seth had so much fun on his Make-A-Wish trip to Disney World in Florida. We took him places as much as we could so he could experience things," Groves said.

Groves said Seth was able to meet and have his photo taken with Noah Coughlin, who will be running across the country for the third time this year to raise awareness for children suffering with Batten disease.

"This year, he will start on Feb. 28 at the Statue of Liberty in New York and will end his run on the Fourth of July in San Diego, California," Groves said.

Alger said Seth attended Wynford School as long as he could then was placed at Angeline School and Industries in Upper Sandusky.

"I was just told that they are going to do a video tribute to Seth at the kindergarten graduation in May, which I think is the greatest thing. He will still receive the diploma that he earned, which we will treasure," Alger said through tears.

Through their journey with Seth and his illness, the family has become involved with BDSRA.

"There are a lot of things that need to be done to help families who are dealing with this disease. Even though the child is approved almost immediately for Social Security after they are diagnosed with Batten disease, it is an uphill battle to get their medical needs and equipment approved and covered," Alger said.

Although Alger had already paid about $8,000 for Seth's funeral and burial ahead of time, the family is still in need of $6,533.24 to finish paying off everything and to get the headstone for Seth's grave.

"And that is after we received $2,225 through a Go Fund Me campaign," Alger said.

The family is conducting a fundraiser through Crossroads Original Designs and Cooper's Mill to help offset the balance of Seth's funeral expenses.

"People can order a variety of products offered at both Crossroads and Cooper's through Nancy, me or Rebecca," Alger said.

Products include a variety of candles, room sprays, jams, apple butter and fudge through both local companies.

For information, call Rebecca at 419-617-2811, Crystal at 419-617-2811 or Nancy at 419-563-5486.

Groves said the fundraiser will end March 6 and money is needed when the orders are placed.

While Alger, Castle and Groves said they will continue to participate in causes to raise money and awareness about Batten disease and to help find a cure, little Mickaylah said, "I miss my Bubby but I know he is Heaven with God and he walks and runs again."

kgasuras@nncogannett.com

419-563-9213

Twitter: @kimberlygasuras

Some facts about Batten disease

• Batten disease is one of approximately 50 diseases called lysosomal storage disorders (LSD), meaning that genetic mutations disrupt the cells ability to dispose of wastes. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids (fats).

• Because of these damaged cells, patients with Batten disease suffer progressive neurological impairment, which includes seizures, visual impairment/blindness, personality and behavior changes, dementia and the loss of motor skills and the ability to walk, talk and communicate.

• Because of widely varying genetic mutations, the arc of Batten disease can vary tremendously for each person. Sadly, until more strides are made in research, treatments and cures, Batten results in an early death of children and adults.